Laying in bed the other morning, having been woke up by a hungry cat and fidgety boy, something clearly came to me. For the first time in a very, very long time my life is as normal, calm and drama-free as I think it ever can be. That was quite a revelation. What comes with calm, you ask? Great question - writer's block! I overthink what I post, what I don't post, if I am being repetitive, if I even have enough to say to keep people interested. Then I realize how very much I miss how therapeutic writing is to me and, lucky you, you get the dirty details on life lol.
So, life is seriously moving along nicely. Without divulging too much, my pending court case has settled and Will, Gabbie and I are settling into a new normal. I do have to say the periodic breaks Will is not with me are a very welcome respite I didn't expect. I was raised that a good mom never needs or asks for help or a break. She is super woman after all. Plus, my babies are my babies and when they are in the nest I am happiest, albeit sleep deprived. So I remain positively hopeful things stay good.
So I lay in bed that morning evaluating things. So much turmoil and chaos in the last 15 years or so. Things I never thought I'd get away from, things I never thought I'd let go of, unhealthy relationships and people I was convinced I was stuck with for life. It is amazing how much I have weeded through and gotten rid of the dead weight. My motto has become "if you aren't on our team, you are the opposition" plain and simple. I realize I am too old and too otherwise predisposed to entertain, accommodate or enable someone else's issues and shortcomings.
The most shocking revelation I had that morning was one of contentment. It took me almost 39 years (well, 39 years as of next month - 38 years as of today, ha!) to figure out but I am here. I get it now when I would hear others say they just were ok where they were. I am content with myself, in my skin, with my strengths and weaknesses and with my own company. I truly realize I was in a desperate rush to find the romance novel happy marriage, 2.2 kids, a dog, a house, a minivan. I spent my whole life trying to force a square peg into a round hole with people who would never be what I needed in my life or what was healthy. I will say each bad choice was a learning experience and made me stronger, for sure. To that end, I am wholly happy at home with a movie or my current knitting project or just cuddling next to my kids and don't feel like something is missing. That is an amazing feeling and a HUGE accomplishment for me.
The kids are doing amazingly well. Gabbie is enjoying her last summer as a preteen and having a great time, I think. She changes everyday and still amazes me as regularly as she infuriates me. I keep telling myself that I got through the toddler mess, I can survive the teen years. I know, I know - I'm good at lying to myself. She enters junior high next month and I still can't believe it. She will be graduating next time I blink. She is a huge, huge helper to me and Will and he truly adores her. Their bond is so amazing to see and watch. We are blessed to have her.
Our Will is just growing and learning and emerging new skills and personality quirks daily. He spends the majority of his time upright and walking, which is something I really didn't think we'd see. I am not a Debbie Downer, I am cautiously optimistic in terms of his AS and our future. My disbelief in his walking stemmed from the fact that for so long he just showed absolutely no interest in actually walking. He was perfectly content crawling and climbing. Guess he sees now how much better it is.
His Cleveland Clinic speech therapist and I decided to forego speech therapy with them for the unforeseeable future. It is hard right now to come up with a treatment plan that is actually beneficial and an effective use of our time. He isn't quite at a point where one alternative form of communication works really really well. His iPad is still a toy, sign is hard because of fine motor skills, the spoken word is hard to teach someone who is genetically predisposed to not have any spoken words. I have to admit, when we got his diagnosis and they said to continue intensive therapy, I didn't quite understand the benefit of speech therapy this young, although I kept him in it. His school speech therapist will be his primary source of alternative speech methods, outside me, and I am totally ok with that as we adore her.
He has had some eating/gagging/vomiting/med issues we are playing with. Spent a day, the week after the fourth of July, traveling to Medina for his pulmonologist and then to downtown Cleveland for his gastroenterologist. He was still holding at his ever steady 34 pounds and his lungs sounded clear but he was coming off an ear infection. From that day we decided to do long term, low dose zithromax for his predisposition to all things upper respiratory. Research has shown that this treatment plan has an anti-inflammatory result on cystic fibrosis patients and it did seem to help him. At his gastro it was decided that it wasn't sounding like he had cyclic vomiting syndrome and more like his reflux was getting the best of him. Keep in mind, he had reflux for two years that I had no clue about until the was diagnosed during an exploratory procedure where they took a biopsy of his stomach. Came back gastritis which doc said was result of undiagnosed and treated reflux. I seriously don't think I'd make it in this life without these two amazingly strong, smart women and accomplished medical professionals. One of the many angels sent my way in this life. Left the gastro with reglan (a stomach emptying med) and zofran (anti-nausea med). This past Saturday found us in EMH Satellite ER (again!) with a unbreakable fever of 102 and I learned that not only did he have ANOTHER ear infection, he had gained two pounds! First time I saw 36 on the scale! Yay Will! Yay Dr. M! So I am still tweaking the reglan (which she prescribed every meal and before bed but it makes him cranky and unstoppably hungry) and zofran which he seems to benefit from taking more often than we thought. Time will tell.
My next big decision is about his school. Been debating this alot the past few days. He will be 4 in 3.5 months and was eligible for pre-school last year when he turned 3. He definitely wasn't ready then and I'm on the fence now. He is such a creature of habit that I truly dread the transition. I also know that my heart will not go for busing and that I will want to drop him off and pick him up which will be so easy with my full time job (said no working mother, ever). Thought was after Christmas we'd start part time - a few days a week, a few hours at a time to start. As he adjusted (or I adjusted, or we adjusted) we would increase that. I truly don't see him adjusting easily to the public school setting. Mr. Sensory goes a bit crazy in the environment. So much to see, hear, touch, smell - and the bell, fuhgettaboutit. Freak out - every time. I guess time will tell and I have to let him tell me what he is ready for and able to handle. So hard to think about sending him off to the world. Hard for every mother with every child, I know, but trusting the world to do right by my non-communicative child may just well be a level of trust I am wholly incapable of. Time will tell. But all who know me and may meet him - I am as bad as people say or as you may think if pushed to it. Just sayin' ;-)
He gets fitted next Wednesday for Sure Steps ankle orthotics. He tends to walk pronated and on his ankles. His physiatrist and PT are worried about his ankle bones in the long term. He had Sure Steps as a young toddler (just around one year old) and they were so much easier to live with. They are small (just past toes to just over ankle) and fit in more shoes easier. I hope they help out his feet issues. They are already pulling in as he walks more, which is great.
So that is life in my little corner of NE Ohio. I hope everyone is having a nice summer, can't believe it is basically half over! That last run of gawd awful hot temperatures has me a-ok with fall approaching. Back to school, changing leaves, crisp morning ear and the fall TV lineup - all good, I think!